Patient Experiences With Antipsychotics Largely Negative, Survey Shows

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Roughly two-thirds of patients categorized their experience with antipsychotics as more negative than positive and 34.9% endorsed an “extremely negative” experience.

According to survey results published in Schizophrenia Bulletin, the majority of patients receiving antipsychotic medications endorsed significant negative effects. Investigators at the department of psychology, University of East London in the United Kingdom created the Experiences of Antidepressants and Antipsychotic Medication Survey, which was administered online to users around the world.

Patients older than 18 years, recruited by social media advertisements and snowball sampling, had to meet the eligibility criteria, including past or current use of antipsychotics and not being a psychiatric hospital inpatient. The survey asked patients (N=650; mean age, 43.0±13.07 years; 71% women) to describe the role of antipsychotics in their treatment and their experiences with them via open-ended questions. The respondents were mainly from the United States (25.1%), Australia (24.5%), and the United Kingdom (22.6%), although 29 countries were represented. The most common diagnoses were schizophrenia or other psychotic disorders (34.5%), bipolar disorders (21.5%), and depressive disorders (21.1%).

Responses were read by investigators and scored on a Likert scale, from 1 “extremely positive” to 7 “extremely negative.” To identify common themes, 2 independent researchers conducted thematic analyses. Reliability was high, with 2 blinded investigators selecting the same score the majority of the time for the Overall Antipsychotic Rating (OAR; κ =.94).

Roughly two-thirds of patients categorized their experience with antipsychotics as more negative than positive and 34.9% endorsed an “extremely negative” experience. Less than a quarter (22.1%) reported largely positive experiences. Whereas 44.5% of respondents found medications unhelpful and 56.0% felt their quality of life was worse, 40.1% reported that medications were helpful and 34.9% declared improvements in quality of life. The mean OAR score was 2.83±1.93, indicating primarily negative experiences, and older patients were more likely to endorse negative scores (P =.001). Patients with a diagnosis on the schizophrenia spectrum reported more negative scores (P =.004). However, the majority of patients without schizophrenia (63.3%) also endorsed more negative than positive experiences.

In thematic analyses, 2 positive themes were identified: “symptom reduction” (n=14) and “sleep” (n=14). However, the majority of positive experiences were unspecified (n=153). Apart from unspecified experiences (n=191), there were 4 negative themes: “adverse effects” (n=316); “interactions with prescriber” (n=169); “withdrawal/difficult to get off them” (n=62); and “ineffective” (n=11). From the reports of adverse events, 5 primary categories were identified: (1) physical, including weight gain, sedation, and tardive dyskinesia; (2) psychological, including emotional numbing and cognitive dysfunction; (3) long-term adverse events; (4) relationship problems; and (5) suicidality.

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The investigators suggested that “studies focusing on symptom reduction, including [randomized clinical trials], may be missing the broader impact of drugs on people’s lives. As study limitations, they cited the use of a convenience sample, which may have overrepresented patients dissatisfied with their antipsychotic regimen, and reliance on self-report data.

The researchers concluded that clinicians and researchers need to facilitate “a collaborative, respectful relationship with potential users of antipsychotics” and acknowledge “when patients voice the sorts of concerns raised in this study.”


Read J, Sacia A. Using open questions to understand 650 people’s experiences with antipsychotic drugs [published online February 12, 2020]. Schizophr Bull. doi:10.1093/schbul/sbaa002